Tri-national ethnographic multi-case study of person-centred practices on resident quality of life in long-term residential care (TRIANGLE)

In a steadily increasing global aging population, the number of older adults requiring care or support due to a decline in either physical or mental health is also rising. Necessary care and support can result from medical needs, a need for assistance with activities of daily living, such as washing and dressing, or social support and interaction. In 2020, it was reported that 25 million older adults in OECD countries were receiving care and support while living in long-term residential care, and giving the currently predicted demographics, it is not expected that this number will significantly reduce. Therefore, there has been an increased interest in long-term residential care research to improve daily care practices, which can impact resident quality of life following a move into long-term residential care. This move to improve long-term residential care services has seen a shift towards more holistic care models, which consider the whole person and focus on improving resident quality of life rather than prolonging life. A leading concept in social care models is person-centred care, which has been linked with improved resident quality of life. The COVID-19 pandemic highlighted pre-existing gaps in how person-centred care was conducted and in some cases caused long-term residential care practices to move back towards more medically focussed models of care.
While much research has been done to address the need and implementation of person-centred care practices in long-term residential care, there are still gaps in knowledge of how best to do this. This is due to differences in each long-term residential care home, for example in terms of physical or organisational structures as well as the different needs of residents living in each setting. An additional challenge has been understanding the true impact of person-centred care from resident perspectives, as extreme functional or cognitive decline, such as advanced dementia, has often led to resident voices being overlooked in research.
This dissertation presents a tri-national study, conducted in three long-term residential care homes in Switzerland, the UK and the Netherlands. The aim was not to make a direct comparison between the three long-term residential care homes, but to learn from the person-centred care practices used in each and take time to gain a full understanding of the local contexts, so that differences and similarities could be discussed within the research team. The research period included peak times of the COVID-19 pandemic, where in most cases research on-site was halted. Fortunately, permission was given to continue with this study in person in Switzerland throughout the pandemic, providing valuable insight into situations as they happened in real time. Each chapter of this dissertation has contributed to this knowledge. More detail is provided in the remainder of this summary.
Chapter one introduces the main concepts within this dissertation: person-centred care and quality of life in long-term residential care. The concepts are explored following a permanent transition into long-term residential care, and with an importance on resident experiences.
Chapter two presents a meta-ethnography to explore interrelating factors between person-centred care and quality of life. This resulted in five second order constructs sharing commonalities: (1) Maintaining dignity, autonomy and independence. (2) Knowing the whole person. (3) Creating a ‘homelike’ environment. (4) Establishing a caring culture. (5) Integrating families and nurturing internal and external relationships. Synthesis translation then led to the following third order constructs: (1) Personalising care within routines (2) Optimising resident environments (3) Giving residents a voice. This information was taken under consideration and provided a base of understanding ahead of the rapid-ethnographic studies.
The COVID-19 pandemic was in the peak of the second wave during the Swiss rapid-ethnographic study. Chapter three explores the experiences of residents, who tested positively for COVID-19 in the Swiss long-term residential care home. Observations, interviews and informal conversations were conducted with residents, staff and family members during the COVID-19 pandemic. After positive tests and subsequent isolation, the COVID-19 journey of three residents were followed with telephone interviews during the infection period and conversations during the recovery period. Data indicated ‘finding meaningful activities’, ‘coping with periods of isolation’, ‘adapting to new daily routines’ and the importance of ‘maintaining mobility and physical activity’ as key emerging themes impacting resident quality of life during COVID-19. COVID-19 lockdown procedures were damaging to resident quality of life and created further barriers to person-centred care practices.
Chapter four provides insights into the person-centred care practices in each of the three long-term residential care homes in Switzerland, the UK and the Netherlands. More specifically, it explores resident experiences of person-centred care during mealtimes using rapid ethnographic methodology. This study aimed to understand moments where opportunities for person-centredness were successfully achieved or missed. The following themes were developed : 1) considering the setting, 2) listening to and implementing resident choice, 3) enabling residents to help/care for themselves and others, 4) providing individualised care in a communal setting, and 5) knowing the person in the past and present. This data showed that residents experienced moments of participatory choice, interaction, independence and dignity, but opportunities for these were often missed due to organisational or policy constraints
The methodology used within this dissertation is critically reflected upon in chapter five. This specifically explores how the methodology could enable the inclusivity of residents living with dementia or other significant deficits to represent the full range of voices within a long-term residential care home. The information presented shows that Through a commitment to listening to residents and understanding specific contexts and cultures, there was a greater emphasis on individual engagement and understanding of person-centeredness.
Chapter six provides insight into staff perspectives within the Swiss LTRC home. By seeking to understand the challenges and practices during the COVID-19 pandemic, this chapter discusses the parallels between this and daily LTRC life. The results of this paper highlight the need for changes to be made on all levels, including macro, meso and micro levels. Most importantly, it shows that more support should be given to staff, whether during a pandemic or not. Only then can theoretically intended person-centred care be successfully implemented.
In chapter seven, the main findings of all studies are discussed, reflecting on theoretical and methodological considerations. This results in recommendations and implications for future research and practice. There is good opportunity to share knowledge between LTRC homes and internationally about what works and what doesn’t when implementing PCC practices. By understanding the context, with strong collaborations and most importantly, by keeping the end user as the central focus by listening to them and including them in research.
Gaining information from three different countries, each practicing person-centred care prior to this study, provided valuable insight into the uniqueness of each individual long-term residential care setting. Having seen this, it is unsurprising that person-centred care remains a challenge, causing opportunities for person-centred actions to be missed. The information learned from conducting this research provides insight for the future in research and in practice. For research, this information provides critical reflection of a largely underutilised methodology in long-term residential care. This considers the individual long-term residential care context alongside the voices of residents, staff and family members to understand lived experiences in order to provide productive and realistic suggestions for change. Furthermore, it demonstrates the benefit of shared international knowledge within local contexts to further understand global concepts, such as person-centred care. For practice, this research demonstrates ways in which long-term residential care homes can provide training, which both educates staff and encourages confidence in their own decision making ability. Additionally, it highlights ways in which changes to the physical and social aspects of long-term residential care homes can facilitate person-centred care practices, which could improve resident quality of life.